CVUHB plans to implement ME/CFS NICE guideline
WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.
Cardiff and Vale’s University Health Board’s Chief Executive Suzanne Rankin shares their plans for improved care for ME with WAMES:
@cardiffandvaleuhb
“As a Health Board the new NICE guidance for ME/CFS have been shared widely across services which support people with ME/CFS and long COVID. Clinicians supporting people with ME/CFS, long COVID and other long-term conditions recognise the concept of energy impairment linked to symptom exacerbation (and strive to embed the awareness within their Treatment and clinical interventions with individuals).
We have a meeting planned between the Executive Directors for Medicine, Nursing and Therapies and Healthcare Sciences to review our current ME/CFS clinical pathway and our services against the recent NICE Guidance.
Training for staff
The UHB has a Rehabilitation Improvement Programme which is focusing on how we can develop our rehabilitation services to ensure we support people with long term conditions to have better access to the help that they need, when they need it. The Rehabilitation Programme is developing ‘A Meaning Full Conversation’ Model of Care which aims to provide education and training across the rehabilitation workforce to support people with advice and strategies to manage common symptoms which may be out of their usual scope of practice. Fatigue, pacing, energy management and post exertional symptom exacerbation forms part of the model.
Rehabilitation services
At a service level we continue to develop our rehabilitation services to ensure we provide people with the education and strategies to support them to manage symptoms including fatigue. This is delivered individually and within a group setting. The group-based interventions help to facilitate peer support and learning from others with similar experiences, and service users have reported that the sessions have been very useful in helping them develop energy management strategies.
Leisure classes
We are also working in partnership with leisure to support us to deliver care nearer to people’s homes. We have trained leisure staff to develop classes and activities to support people who have long-term conditions, and to increase their awareness of common symptoms including fatigue and energy impairment presentations, to help them have the skills and knowledge to work with people and support them to return to increased levels of activity if this is their goal.
Co-production for long-term conditions support
As you are aware, we have also established co-production meetings bringing together people with lived experience of a long-term conditions, health professionals, third sectors and organisations across Cardiff and Vale to work together to ensure we are meeting the populations needs. Representatives from The Welsh Association of ME & CFS Support have attended both events to date and we have really valued their insight and contribution to the meetings.
COVID services
As we recover and reset from COVID as a Health Board we are focused on improving the health of whole population and supporting people with long term conditions to get the help they need. We are currently considering how we can develop our COVID service to broaden its access to a number of conditions including ME/CFS.
Do be assured we will keep you involved and look forward to progressing this.”
WAMES would like to hear from anyone with ME/CFS living in Cardiff and the Vale of Glamorgan about the service they have received since the publication of the revised ME/CFS NICE guideline in October 2021, so we can continue to work towards improving those services. #ImplementNICEmecfs Contact jan@wames.org.uk
Read what other Health Boards say: Aneurin Bevan; Betsi Cadwaladr; Cwm Taf; Powys; Swansea Bay.
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During 2021 and early 2022 thousands of clinicians, patients and carers throughout the UK worked together to identify areas of ME/CFS that need to be researched. An ME/CFS Priority Setting Partnership (PSP) was set up to determine what should be prioritised.
“Now that we have the Top 10+, researchers, funders and government must work with people with ME/CFS to produce the highest quality research into these areas, and continue to prioritise ME”
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The Women’s Health Wales report is a collaborative, co-produced report that outlines 26 areas of healthcare where women, girls, and those assigned female at birth are disproportionately impacted. It includes a range of physical and mental health conditions and issues which might affect this population at different points in their lives and makes a series of recommendations we wish to see implemented to improve their health, lives, and wellbeing – both now and for future generations.
